So, here is the overdue update on the plan for Charlie's prosthetic arm.
We met with the nice people at the prosthetic & orthodic department of the Rehabilitation Institute of Chicago
. My sister rehabbed at RIC after her stroke, 35 years ago, and she was able to accomplish a huge amount there, so taking Charlie there was the natural choice. Also they run a pediatric limb deficiency daylong clinic every few months where the kids can meet each other and see an orthopedist, a prostheticist, a physical therapist, and an occupational therapist all in one go. We'll be doing that in August when the next one happens. Oh and also, as it turns out, they're a national leader in prosthetics R&D, including bionics (More info here
). So we're excited to be able to get Charlie started with them so early in his life.
Anyway, they said Charlie's a very good candidate for a prosthetic arm, and since he's sitting unassisted and crawling he's definitely ready for one. Since he is lacking the left elbow as well as hand & forearm, the beginner prosthetic arm will have the elbow fixed in the bent position, with a molded hand that has a manually-operated opposable thumb
so that he can hold things in it. It defaults to a closed position so he won't drop stuff.
We've chosen a body-powered arm rather than a myoelectric one--myoelectric (controlled by muscle signals & sensors) is cooler, but more specialized and harder to take care of and possibly harder to use, at first anyway. The body powered arm will give him the body skills he needs to go in a lot of different directions with prosthetics use when he's an adult. So, once he's gotten used to wearing the arm & the associated harness, and using the hand for some stuff, he'll upgrade to a "voluntary opening" hand with a wired thumb
, that will open when he moves his shoulders a particular way in the harness (probably in a year or two?). Once he masters a voluntary/wired hand, he'll be upgraded to a wired elbow as well.
As he gets older, he'll get new molded socket inserts a couple times a year, and a whole new arm mold about once per year. The hands only come in a few sizes so he won't have too many hand swaps as he grows up. However, once he's using the adult size arm/wrist mount, he will be able to use an amazing variety of specialty replacement hands
. My favorite is the camera mount. The basketball hand is also pretty awesome looking:
Once you let go of the idea of making it look or function like a human hand, all kinds of stuff is possible.
The coolest thing about this first arm? We said we're not interested in a cosmetic prosthesis for him; we want him to feel his body is whole without (most of) a left arm, and that the prosthetic arm is a really cool tool. They agreed with this--children who are born with a limb absence don't have the sense of loss that people who lose a limb do. The hand will be caucasian flesh color (it only comes in 3 colors, and that's the closest match to Charlie's skin), but for the rest of the arm they will take any piece of stretchy fabric I care to give them, and laminate it into the arm. OMG SO COOL! I have some dinosaur fabric that I think will be perfect.
The plaster casting of his arm will happen on June 10, followed by a couple of fittings and then ongoing physical therapy. YAY arm! Giving a weapon to a 1-year-old baby, possibly not awesome from the POV of the people around him, but overall this is going to be AWESOME.